Can Novels Change Our Attitudes About Death?

Searching for death-positive books in a death-phobic culture

By John MacNeill Miller

Not long after they die, even the best novelists start to stink.

Maybe that explains why we have so few great stories about what happens after we die. The novelistic tradition is rich with deathbed scenes and moving explorations of grief, but serious fiction about mortality inevitably stops at death’s door. Remarking this pattern in 1927, E. M. Forster blamed novelists’ hesitation to write about the dead on the dead themselves. “[D]eath is coming,” he admits in his influential treatise Aspects of the Novel, but we cannot write about it in any convincing way because — as the saying goes — dead men tell no tales. “Our final experience, like our first, is conjectural,” he concludes. “We move between two darknesses.”

Forster’s reasoning seems sound enough. If we want to move from a pathologically death-phobic culture to a more well-adjusted one, however, we need to rethink our cultural tradition of giving death the silent treatment. That is the sentiment underlying the death-positive movement, a loose collective of artists, writers, academics, and funeral industry professionals agitating for more open conversations about dying. As the mortician and author Caitlin Doughty explains in her bestselling memoir Smoke Gets in Your Eyes, “A culture that denies death is a barrier to achieving a good death.”

At the very minimum, our culture of death denial creates a population unprepared for the inevitability of death, one in which every dying individual burdens family and friends with painful healthcare decisions, legal battles, and property disputes that could have been avoided with a little forethought. At its worst, death denial promotes a youth- and health-obsessed society whose inability to address death fuels overwhelming feelings of anxiety, depression, and powerlessness in the face of illness and age.

As Doughty — perhaps the most prominent figure of the death-positive movement — admits at the end of her memoir, “Overcoming our fears and wild misconceptions about death will be no small task.” She looks to the medieval spiritual guidebooks known as Ars Moriendi (Latin for “The Art of Dying”) for inspiration. We need to re-teach ourselves how to die, she argues — a process that begins with an open admission of our thoughts, fears, and beliefs about death. Treating death as a hushed affair will only make matters worse. “Let us instead reclaim our mortality,” she concludes, “writing our own Ars Moriendi for the modern world with bold, fearless strokes.”

We need to re-teach ourselves how to die—a process that begins with an open admission of our thoughts, fears, and beliefs about death.

The spate of books on death and dying published in the past two years suggests that many writers have taken Doughty’s words to heart. These works run the gamut from a grisly history of Victorian surgery to a study of American hauntings, and they include the lavishly illustrated essay collection Death: A Graveside Companion and Doughty’s own From Here to Eternity, a comparative analysis of death practices from around the world. For a group interested in the art of dying, however, the death-positive movement is strikingly uninterested in art of the literary variety: in its concentration on turning a spotlight on the facts of death, the death-positive movement has not yet explored the relationship between death and fiction.

If we want to reclaim the good death as part of the good life, we need to consider how we incorporate death in the stories we tell about ourselves. When we tacitly treat death as The End of every individual’s story, we only increase a collective sense of death’s unspeakability. What lies beyond the grave seems unthinkable in part because it remains unimaginable. Yet if Forster is right, it seems we are at an impasse: given the silence of the tomb, how can storytellers represent death as something other than a final stop?

If we want to reclaim the good death as part of the good life, we need to consider how we incorporate death in the stories we tell about ourselves.

Two award-winning attempts at writing the afterlife — one from 1999 and one from 2017 — offer two different approaches to answering the question. Taken together, Being Dead and Lincoln in the Bardo show that it is possible to tell smart, powerful stories that represent death as something other than a stunningly final silence. They also show that the precise forms such stories take have profound implications for the ways we value life, and the ways we understand the place of death within it.

The very title of Jim Crace’s Being Dead promises tantalizing access to that posthumous experience that Forster believed to be off limits. Yet there is a bit of a bait-and-switch here: Crace’s novel leaves little room for speculative adventures into otherworldly existence. Being Dead is a postmortem story in an almost clinical sense. It tells the love story of Joseph and Celice, two young scientists who get married, raise a daughter, and settle into late life together. But if this is love, it is love under the knife: Crace’s scalpel-sharp realism cuts to the heart of desire with a kind of ruthless detachment unmatched since Flaubert.

The result is less the touching portrait of a couple than an autopsy of their relationship — and that is only appropriate, because the novel opens with their murder. Joseph and Celice die of a kind of misplaced nostalgia. They have unnecessarily returned, in late middle age, to the sand dunes where they first conducted research together and gave in to youthful passion. The explicit purpose of their trip is to visit the dunes one last time before the place is destroyed by encroaching development. But the couple’s desire, here and elsewhere, is divided: Celice wants to make peace with the death of a friend that occurred exactly as she and Joseph first fell for each other, while Joseph only wants to reenact their tryst on the dunes.

Joseph’s “plan” is utterly transparent to Celice, who indulges him out of pity rather than affection. Their actual encounter ends in embarrassment; Joseph finishes before it starts. They resolve to try again after lunch but never get that chance. A furious stranger stumbles across the defenseless, naked pair as they sit together, and he bashes their skulls in with a rock.

Because the couple has already died as the story begins, the novel proceeds by alternating backward glances with real-time narration, interspersing Joseph and Cecile’s love story with the lurid details of their bodily decomposition. The result is touching and gruesome by turns, but not necessarily in the ways you would expect: the descriptions of decay offer welcome relief from the cringeworthy details of the awkward, lopsided desires that brought the couple together. The novel seems, in fact, to struggle with its own inevitable slide toward the romanticization of decay. “Do not be fooled,” Crace admonishes his reader early on:

There was no beauty for them in the dunes, no painterly tranquility in death framed by the sky, the ocean and the land, that pious trinity in which their two bodies, supine, prone, were posed as lifeless waxworks of themselves, sweetly unperturbed and ruffled only by the wind. This was an ugly scene. They had been shamed. They were undignified.

Yet Crace lingers almost lovingly over Joseph and Celice’s bodily transformations as they lie exposed among the seagrass. While their love life is painfully prosaic, the passages that describe their undiscovered bodies flirt with a far more idealistic vision of human attachment:

But the rain, the wind, the shooting stars, the maggots and the shame had not succeeded yet in blowing them away or bringing to an end their days of grace. There’d been no thunderclap so far. His hand was touching her. The flesh on flesh. The fingertip across the tendon strings. He still held on. She still was held.

Being Dead manages to recast our bodily afterlives as something not only speakable, but significant. It does so, however, by valorizing the unconscious peace of our material remains, casting that as preferable to the despicable fumblings of actual life. The intimacy of Joseph and Celice is only unproblematic when they have become unfeeling matter, generously supplying the landscape with the nutrients sloughing off their unprotected flesh. If Being Dead achieves an unusually death-positive outlook, it achieves it by becoming decidedly life-negative.

George Saunders’s more recent exploration of experience after death takes a radically different approach. Whereas Being Dead aligns itself with a kind of scientific detachment, Saunders’s Lincoln in the Bardo proves exuberantly grotesque from the outset. The story opens with the middle-aged Hans Vollman describing his gradual, tender seduction of his young wife. Alas, on the very day she promises to give herself to him, a loose beam falls and crushes his skull. Unable to accept the fact of his permanently unconsummated marriage, Vollman haunts the cemetery where he is buried, joining a number of other lingering spirits who convince themselves they are merely sick and will soon recover.

Saunders does not deal with decomposition in the straightforward way favored by Crace. His dead characters experience a progressive material instability instead, as they undergo bodily embarrassments that range from the familiar to the fantastic. Hans’s earthly fixations, for example, make him appear to other spirits with an oversized and irrepressible erection. He repeatedly bumbles into discussion of his physical shortcomings, from the baldness and lameness that plagued him in life to the mortifying fact that he pooped his pants after death. His fellow revenants suffer similar corporeal distortions: Roger Bevins III, a Whitmanian poet who killed himself in a fit of passion, fights to suppress the shapeshifting, hungry bundles of hands and eyes that sprout from his body in futile attempts to grasp after the experiences he denied himself by taking his own life.

If death positivity means staring unpleasant facts in the face, Being Dead would seem to be a more death-positive novel than Lincoln in the Bardo. Crace treats both the issue of decomposition and the unconsciousness of the dead in frank terms, whereas Saunders passes over putrefaction to depict a world where the dead might yet live — at least temporarily. But reading the texts together suggests that death positivity cannot emerge from objective attention to facts alone. In fact, Lincoln in the Bardo reveals that the fascination with prurient facts that underpins Being Dead emerges from a kind of puritanical fear of our fleshly existence, a fear inseparable from the novel’s reliance on an omniscient narrator.

We have become comfortable with the idea that a story can be told by the all-seeing eye of a disembodied voice. Strictly speaking, however, this supposedly objective “view from nowhere” is an absurd fiction — at least as impractical and unrealistic as any postmortem point of view. The impracticality of objective narration is especially apparent in Being Dead because the novel is so preoccupied with death, the very moment supposed to divide subjective from objective existence.

10 Death-Obsessed Books to Satisfy Your Inner Goth

By viewing the bodily histories of Joseph and Celice from the outside, the narrator of Being Dead does them — and us — a disservice. The novel only pretends to a fearlessly honest account of human bodies, when its perspective is essentially fearful. Rather than acknowledging the embodied experience the author shares with his subject matter, it retreats into the sham detachment of an etherealized narrator, an imaginary voice pretending to possess unearthly objectivity.

The result is an impossibly disembodied account of what bodies are, one that ends up portraying all embodied consciousness as disappointing, limited, and pitiful. Rather than treating death as an inevitable part of a continuous material experience we all share, Being Dead idealizes it in the way it idealizes all objectivity: in Being Dead, death offers a welcome break from the painful awkwardness of embodied consciousness. Saunders, by contrast, dives with rollicking good humor into the oddness of bodies, acknowledging such awkwardness — and embracing bodies all the more for it.

Lincoln in the Bardo has no imaginary narrator watching earthly existence from the outside. The story is told through a series of (mostly dead) characters whose interwoven monologues clumsily strive to explain their current state while avoiding any admission of their own deaths. The result is a world — the Bardo — that seems, at first, sui generis, a marvelous oddity sprung from the mind of one of our foremost storytellers. Soon, however, it acquires an uncanny familiarity.

For all its unworldliness, the community Saunders depicts is very like our own. His novel is a gently satirical portrait of a society founded on an elaborate charade of death denial; the plot turns on the shades’ need to realize the absurdity of the fiction that they can avoid their own deaths. It begins with the introduction of a newcomer — a freshly dead soul who is promptly welcomed with Vollman’s raunchy monologue. But Vollman is suddenly (and hilariously) taken aback to discover that he has just told his tale of penises and poop to a young, innocent, sad-faced boy who turns out to be the president’s son, Willie Lincoln, who has died of typhoid fever in the early days of the Civil War.

The timing of this weirdest of historical fictions cannot be coincidental. As Doughty and others have observed, the American Civil War marks the starting point of the modern death industry. Embalming, once considered a ghastly and unnatural process, became mainstream in the United States when families faced with the logistical problem of transporting bodies intact over long distances — the bodies of soldiers who were dying in unprecedented numbers far from their birthplaces. Embalming solved the problem, but it required a new kind of expertise. Suddenly the preparation of bodies — once an intimate affair, largely the work of women who cleaned and dressed their dead at home — became an invasive professional process. The Civil War thus launched the profession of the funeral director into the mainstream, driving a wedge between Americans and their dead.

Saunders’s novel offers us a glimpse of a more intimate antebellum relation with the dead to remind us of what we lost. It offers a profoundly moving account of an entire community of people awakening to an awareness of their own mortality. The story is simple enough: the denizens of the cemetery welcome young Willie, then watch in confusion as Abraham Lincoln repeatedly returns to his son’s tomb after dark to open it and embrace the body. As they look on, the roving spirits begin to recognize the loathing of their own bodies that lies at the heart of their death denial. The spirits speak in a series of rapid epiphanies about their own self-hatred, triggered by the loving touch Lincoln bestows on his son:

To be touched so lovingly, so fondly, as if one were still —

—roger bevins iii

Healthy.

—hans vollman

As if one were still worthy of affection and respect?

It was cheering. It gave us hope.

—the reverend everly thomas

We were perhaps not so unlovable as we had come to believe.

—roger bevins iii

The intimate attachment of the dead with the living fills them — and us — with something other than horror. It provokes surprise that gives way to admiration and awe as the dead realize that their shared fate does not deserve the hatred they have wasted on it.

It is an impressive portrait of a world to come. Of course Lincoln in the Bardo is, finally, a fiction — and a deeply unrealistic one at that. Nevertheless, the novel’s fantastical qualities do not make it less useful to the death-positive movement. If anything, its very lack of realism clarifies the important role fiction must play in our collective struggle to reimagine our relationship with death.

Lincoln in the Bardo shows accepting death to be inextricable from accepting the oddness of bodies. In Lincoln’s repeated visits to the cemetery, the spirits discover an individual not only unafraid of bodies but positively in love with one. Lincoln’s conflictedness shows him loving his son as a physical being — even in his diminished, postmortem form — and indulging that love precisely because he knows the body cannot last, that he must finally let it go.

What Vollman, Bevins, and the others come to understand through Lincoln’s example is how to reattach their senses of identity to their bodies. They learn to be generous to themselves as messy material beings, to include both their bodily joys and their bodily fallibility into their essential understanding of what it means to be. When they accept this epiphany they vanish, receding into something beyond our reach. But that disappearance no longer feels like an abrupt rupture of subjective experience, or something at odds with life. Death becomes, instead, a kind of higher accomplishment — a letting-go that most of us are not yet ready to aspire to.

That kind of awed acceptance is finally unavailable to Being Dead. Crace’s novel revels in a species of passionless scientific accuracy whose view is finally less able to understand death, and less able to represent it, precisely because death is such a deeply subjective experience. Death, in other words, only happens to subjects, to embodied beings immersed in material experience. That is precisely the experience that Being Dead, like works of strict nonfiction, refuses to include.

Lincoln in the Bardo reminds us that it makes no sense to aspire to unflinching objective accuracy when we are all flinching, subjective, and messy bodily beings. The attempt to adopt a dispassionate perspective on death is itself an example of our absurd aspiration to inhabit an undying, unearthly worldview. It is at once unhealthy and impossible. Clinical detachment from our shared embodiedness is the most pernicious of fictions.

The attempt to adopt a dispassionate perspective on death is itself an example of our absurd aspiration to inhabit an undying, unearthly worldview. It is at once unhealthy and impossible.

The death-positive movement has already made enormous strides toward making death a subject of public discussion. What we need now, however, is an examination of death as more than just a matter of fact. We need new fictions that understand death as an imaginative challenge — a challenge that cannot be overcome by stricter adherence to objective detachment, the interminable piling of fact on fact. We need innovative modes of storytelling that can disabuse us of this unhelpful obsession with objectivity, stories that help us see physical matter not as an assuredly lifeless, senseless object we all eventually become, but as the very thing that defines and enables our existence — the thing from which life and mind continuously, mysteriously emerges. Only then will we be able to forge a way forward that leaves us unafraid of our shared inhabitation of our fragile, corruptible, beautiful bodies.

Complete Article HERE!

Review: The Art of Dying Well – A Practical Guide to a Good End of Life

Author photo Katy Butler and book cover

By Trish Rodriguez*

I have to confess that I am a Katy Butler fan. When I started the journey to become an End of Life Doula, her Knocking on Heaven’s Door was one of the first books that I read. I didn’t so much read the book as devoured it, often catching a sob in my throat as I read her deeply personal account of the horror show that became her fathers final years. I admired the courage and honesty of the parts of the book that were memoir, and the research on the current culture of American healthcare with respect to death. I agreed that our way of dying in the good ol’ USA has come to leave something to be desired.

In her newest work The Art of Dying Well – A Practical Guide to a Good End of Life, Katy picks up the narrative in a new and accessible way. She divides the process of moving toward the end into seven unique segments defined not so much by age but by ability and functionality. At the beginning of each of these chapters she has a list of statements and suggests that if many of these apply to you now, this might be where you find yourself. I found this approach fresh and, best of all, non-threatening. This might be just the way to start a conversation with a unwilling family member.

In the first segment, aptly titled Resilience, we learn that in this stage of well being we can still dramatically impact our health, longevity, and ultimately the quality of our death. By building reserves (aka altering what we eat and whether we’re active enough), finding allies in preventative medicine, and increasing our circle of friends and acquaintances, we are still in the drivers seat with regard to how things will go for us as our situation changes. This perspective gives lots of practical advice for those who may think there is plenty of time.

With each ongoing chapter comes an inevitable decline – not according to any decade of life or disease process – but according to naturally decreasing functionality. I like that she is careful to follow this definition, as people age as they darn well please, and I personally know 90 year olds who are still more capable than I am. This lets you find your home page, so to speak, without feeling like a failure or self fulfilling a prophecy to act your age. Every chapter offers practical advice; about healthcare, money, housing, and all those pesky details like advanced directives and wills. In nearly every chapter there are personal accounts of folks who managed things well, or not so well, and lots of food for thought.

There was a great deal of material that wasn’t new to me, but I work with dying  people. In my every day life, I am always shocked at how hard working, responsible people don’t bother with a will or advanced directive… because? They aren’t going to die? Or they’re not going to die tomorrow? This book may be just the ticket to get you going, or to give to that parent who is dragging their feet about preparing for anything. With a helpful glossary and pages and pages of useful references included, this will certainly be a ‘go to’ book in my personal library and in my practice.

* Special correspondent, Trish Rodriguez,  is an End of Life Doula and hospice vigil volunteer in Anacortes, WA.

‘People have been frightened for me to tell their loved one they’re dying, in case they die quicker’

An intensive care doctor has written an honest book about her experiences.

NONE OF US want to end up in intensive care. But if we do, we should hope we end up with a doctor like Aoife Abbey.

The UK-based Irish doctor has written a book about what it is like being an intensive care doctor, exploring the emotional moments she has experienced. It’s a book that might just change how you think about death – and how you talk to your family about it.

After reading the book, Seven Signs of Life, you’ll want to sit down with your nearest and dearest to discuss what might happen to you should end up needing intensive care. Talking about death or serious illness is a taboo that still persists, but Dublin-born Abbey – who is in her mid-thirties – wants us to confront it.

“I appreciate people need to talk about death more because what I often say is, people come into intensive care, they don’t know they’re going to be there – it’s a surprise to everybody, they’ve had an accident or something,” she explains. “And you say to their family ‘what do you think they would have wanted?’ And the answer is ‘God, I don’t know. We haven’t talked about it.’ Why would you?”

This avoidance can lead to big questions being unanswered. “How would the patient feel about risking being alive and not being able to talk, how would they feel about organ donation? There’s lots of things people don’t discuss, and I think we need to discuss them more,” says Abbey, who graduated from the University of Warwick in 2011.

She advises people to have those difficult conversations with loved ones. “But what I would say is that it can often be difficult to imagine yourself in situations, so people might say ‘oh I would hate to have dementia. I’d rather just drop off.’,” she cautions. “When actually they don’t know that it’s true, because they’re not in that situation. So I think we have to be careful when we have conversations about life and death and what you’d like, in that we’re having general conversations and that we’re still not trying to pigeonhole people into certain decisions.”

Because often people will say ‘I would hate to live this way’ but actually then find an amount of joy and contentment living that way in the end because they have no other option. It is a difficult conversation.

“I guess in Ireland there’s always that thing of people say ‘don’t tempt fate’,” she says. Abbey and her family have had to deal with serious illness themselves. Her brother, Aaron, was a disability rights campaigner and died in October 2018. He was in and out of hospital a lot while the siblings were growing up.

“I’ve certainly had encounters where people have been frightened for me to tell their loved one that they are dying. And not just because they were worried that it would upset them emotionally, which is a very valid worry and I would worry the same thing,” says Abbey.

Because they would feel like that would mean they would die quicker. That crops up quite a lot, people say don’t tell them, because they’ll just give up.

‘It’s routine… until it isn’t’

The book was inspired by anonymous columns Abbey wrote for the British Medical Association, and the stories of the patients in the book are anonymised and amalgamated.

“I always loved intensive care and I loved it because there’s a lot of science there, you get to be specific, you get to care about the numbers,” says Abbey. “You have a lot of facilities, you know the nursing to patient ratio is one to one or one to two, you have all the numbers in front of you, everything is quite scientific.”

At the same time, this is juxtaposed against “the massive uncertainty of not knowing what somebody’s outcome is going to be”.

The level of pressure and responsibility builds the longer you work in intensive care.

There’s always an opportunity to ask for help. You learn as you go along and that’s how we do it, so it was never the case where I had to walk into an ICU and make loads of decisions.

She says that like everything in medicine, “all of this stuff is routine until it isn’t”. Indeed, in the book she details times when things did not go to plan. “If you intubate 100 patients and 99 of them are perfect, easy … it’s the one that’s difficult that’s the issue. So most things are routine, there’s always the potential for it not to be.”

When it comes to errors, the onus is on the doctor to make sure they learn from it.

“There’s nothing that makes you learn more than making a mistake,” she says. “You’re unlikely to ever do it again.”

The main thing is there is a culture, and it’s the right culture, where we don’t blame people when they make mistakes. And we’re supposed to recognise it’s a systems failure, and there’s lots of different explanations for why things go wrong, and it’s rarely one person’s issue; one person’s fault. But at the same time you have to figure out ways as a doctor to still accept and be OK with the fact also that you did make a mistake.

She includes in the book an incident where she missed something on a chest x-ray. It must have been nerve-wracking to write about when she first included it in a Secret Doctor blog post.

“It is still in numbers their most read blog. So it’s … I’m not going to say vindicated but there’s a need for that kind of discussion and people clearly had an interest or it struck a chord with them.”

She has never worked with the HSE, and describes the NHS as something that’s very much woven into national identity in the UK. “You have this service that’s free at the point of care, and people are very proud of it. It’s a very emotive topic,” she says, noting that “it doesn’t matter how angry the media is with the NHS at a given point, patients that I see behave the same. Most of them they are grateful, they’re frightened, they’re scared – they are just people, they are separate from political issues.”

Speaking of political issues, the big one for NHS workers and Irish emigrants like Abbey is Brexit. “If I wasn’t from Ireland I would have a huge amount of uncertainty and I’d be very worried,” she says. “You don’t really know what’s going on. You take so much for granted.”

But it’s not something that she lets take over her work. “I think you just learn to be very focused on what you’re doing. You have to let things in in the moment or else you’re not human, and you can’t engage with someone who’s being very emotional with you with a wall in front of you, because it’s not human and it’s not very nice for them either.”

She has learned to talk to her colleagues and friends about things that affect her, and not keep it bottled up. This is her eighth year in training, and in August 2020 she’ll be able to pursue a consultant job.

In the book she details very tender and emotional moments, such as when a dying man asks her to lift his head up so he can talk to her properly. It’s those intimate moments that leave an impact on her.

“There’s things you get exposed to but I guess in the moment it’s so much about what that person is feeling, you do feel a little bit humbled by the fact that you’re able to give them anything,” she says.

Because they’re going through something that is horrible. And you put it aside until you get home, or until you close the door of the room.

Seven Signs of Life is out now, published by Penguin Random House.

Complete Article HERE!

Mother grapples with grief in ‘Where Reasons End’

By Michael Magras

It’s not surprising that someone whose whole life revolves around words would turn to literature in a time of tragedy to make sense of her suffering. The paradox is that the person most likely to seek solace from words is also the most likely to realize their insufficiency.

One such person is the unnamed narrator of “Where Reasons End,” Yiyun Li’s new novel. The 44-year-old narrator is a writer of stories and a grieving mother. For reasons that are never explained, her 16-year-old son, whom she calls Nikolai, “a name he had given himself,” killed himself only a few months earlier — a painful parallel to real life, as Li’s own 16-year-old son committed suicide in 2017

The novel is a series of imagined conversations between mother and son. From the start, we learn that the mother is agonizingly self-aware, both of herself and of the possible futility of these conversations.

That and the parallel to Li’s life are what make the experience of reading this work so powerful: the knowledge that the narrator needs the comfort of words yet senses their limitations. “I was a generic parent grieving a generic child lost to an inexplicable tragedy,” she says in the opening chapter. She seeks specificity, the need to “meet in a world unspecified in time and space … a world made up by words, and words only.”

One of the most arresting aspects of this novel is the way in which Li subverts expectations. One might expect Nikolai to be a sweet boy offering relentless comfort to his grieving mother. He’s a charmer, all right, a precocious son who painted whimsical landscapes, played the oboe and liked classical music and showtunes. And he was a bad speller who labeled a folder of songs “Edith Pilaf.”

But he has a sardonic edge that keeps him from seeming too precious. When his writer mother tells him that so many people miss him, Nikolai says she’s succumbing to the lure of clichés and admonishes her with, “You promised that you would understand.” When he accuses her of wanting him to feel sad for himself, he adds, chillingly, “I’m not as sad as you think. Not anymore.”

The dialogues in “Where Reasons End” cover a wide range of topics. Mother and son discuss love and memory and whether those capacities really do keep people alive forever. They discuss the capriciousness of time. Nikolai chides her for her dislike of adjectives, which she defends by saying that nouns, not adjectives, preserve memories. Besides, “I oppose anything judgmental,” she says, “and adjectives are opinionated words.”

Much of this book is devoted to words, which is not surprising given that its narrator lives by them: “Words said to me. Words not meant for me but picked up by me in any case. Words in their written form. Words that make sense and words that make nonsense.” When one is in search of helpful words, poets are a good place to start, as their facility often crystallizes hard-to-express truths. Indeed, the narrator references many poets, including Marianne Moore, Elizabeth Bishop — the novel’s title comes from Bishop’s poem “Argument” — and Wallace Stevens.

Even poets, however, provide limited comfort, and the mother depicted here knows it. This realization compounds her grief as much as it ameliorates. “Words provided to me — loss, grief, sorrow, bereavement, trauma — never seemed to be able to speak precisely of what was plaguing me,” she says. “One can and must live with loss and grief and sorrow and bereavement.”

Later, she adds, “We feel at a loss for words when they can’t do fully what we want them to.” To which Nikolai offers as wise a defense of words as one is likely to find. “They never can,” he says, but, “Why not make do with the percentage they can achieve?”

The book gets repetitive after a while — much is made of the Latin derivations of words, and some of Nikolai’s dialogue is too stilted even for a sophisticated teen — yet its message is nonetheless a sobering one. Nothing can ever fill the hollows formed by tragedy, yet the desire to fill them is every bit as keen as the loss. If even a fraction of the emptiness is replaced, then the quest is worth the effort.

Late in the novel, the narrator quotes Stevens’s poem “This Solitude of Cataracts”: “He wanted the river to go on flowing the same way, To keep on flowing.” Anyone who has ever lost a loved one — that would be all of us — will relate. If only they were still here to keep the river of our lives flowing as it once had.

Complete Article HERE!

A Dying Young Woman Reminds Us How to Live

THE UNWINDING OF THE MIRACLE
A Memoir of Life, Death, and Everything That Comes After
By Julie Yip-Williams

Julie Yip-Williams

By Lori Gottlieb

When we meet Julie Yip-Williams at the beginning of “The Unwinding of the Miracle,” her eloquent, gutting and at times disarmingly funny memoir, she has already died, having succumbed to colon cancer in March 2018 at the age of 42, leaving behind her husband and two young daughters. And so she joins the recent spate of debuts from dead authors, including Paul Kalanithi and Nina Riggs, who also documented their early demises. We might be tempted to assume that these books were written mostly for the writers themselves, as a way to make sense of a frightening diagnosis and uncertain future; or for their families, as a legacy of sorts, in order to be known more fully while alive and kept in mind once they were gone.

By dint of being published, though, they were also written for us — strangers looking in from the outside. From our seemingly safe vantage point, we’re granted the privilege of witnessing a life-altering experience while knowing that we have the luxury of time. We can set the book down and mindlessly scroll through Twitter, defer our dreams for another year or worry about repairing a rift later, because our paths are different.

Except that’s not entirely true. Life has a 100 percent mortality rate; each of us will die, and most of us have no idea when. Therefore, Yip-Williams tells us, she has set out to write an “exhortation” to us in our complacency: “Live while you’re living, friends.”

Before her diagnosis in 2013, Yip-Williams had done more than her share of living. It was, indeed, something of a miracle that she was alive at age 37 when she traveled to a family wedding and ended up in the hospital where she received her cancer diagnosis. Born poor and blind to Chinese parents in postwar Vietnam, she was sentenced to death by her paternal grandmother, who believed that her disability would bring shame to the family and render her an unmarriageable burden. But when her parents brought her to an herbalist and asked him to euthanize her, he refused.

The family would eventually survive a dangerous escape on a sinking boat to Hong Kong, and less than a year later make their way to the United States, where at 4 years old, Yip-Williams had a surgery that granted her some vision, if not enough to drive or read a menu without a magnifying glass.

She would go on to defy her family’s expectations, eventually graduating from Harvard Law School, traveling the world solo and working at a prestigious law firm where she meets Josh, the love of her life. She becomes a mother and, soon after, a cancer patient, and soon after that, because of this unfortunate circumstance, a magnificent writer.

During the five years from her diagnosis to her death, we enter her world in the most intimate way as she cycles through Elisabeth Kübler-Ross’s famous stages of grieving: denial, anger, bargaining, depression and acceptance. Describing the ways in which terminally ill patients cope with their own deaths, these stages weren’t meant to delineate a neat sequential progression but rather the various emotional states a dying person might visit, leave and visit again.

Yip-Williams toggles between optimism and despair, between believing she’ll defy the statistics as she had so many times in her life — “odds are not prophecy” — and trying to persuade her husband to confront their harrowing reality. She makes bargains with God, just as she did as a young girl when, in exchange for her poor vision, she asked for a soul mate one day. (“God accepted my deal!”) She posts pictures of contented normalcy on Facebook — of meals cooked, a car purchased — but rages at her husband, healthy people, the universe and, silently, at the moms at a birthday party who ask how she’s doing. “Oh, fine. Just hanging in there,” she replies, while wanting to scream: “I didn’t deserve this! My children didn’t deserve this!” She frets about the “Slutty Second Wife” her husband will one day marry and the pain her daughters will experience in her absence. And, near the end, she oscillates between being game to try every possible treatment and accepting that nothing will keep her alive.

“Paradoxes abound in life,” Yip-Williams writes in a heart-rending letter to her daughters; she asks us to confront these paradoxes with her head-on. One of the paradoxes of this book is that Yip-Williams writes with such vibrancy and electricity even as she is dying. She moves seamlessly from an incisive description of her mother as “the type of woman who sucks blame and guilt into herself through a giant straw,” to the gallows humor of “Nothing says ‘commitment to living’ quite like taking out a mortgage,” to the keen observation “Health is wasted on the healthy, and life is wasted on the living.” Unlike the woman in her support group who, after being given a terminal prognosis, defiantly declares, “Dying is not an option,” Yip-Williams prepares meticulously for her death while paying close attention to the life she will one day miss: “the simple ritual of loading and unloading the dishwasher. … making Costco runs. … watching TV with Josh. … taking my kids to school.”

This memoir is so many things — a triumphant tale of a blind immigrant, a remarkable philosophical treatise and a call to arms to pay attention to the limited time we have on this earth. But at its core, it’s an exquisitely moving portrait of the daily stuff of life: family secrets and family ties, marriage and its limitlessness and limitations, wild and unbounded parental love and, ultimately, the graceful recognition of what we can’t — and can — control.

“We control the effort we have put into living,” Yip-Williams writes, and the effort she has put into it is palpable. Of all the reasons we’re drawn to these memoirs, perhaps we read them most for this: They remind us to put in our own effort. It would be nearly impossible to read this book and not take her exhortation seriously.

Complete Article HERE!

Using Graphic Memoirs to Tackle Tough Topics

Librarian Marissa Lamer has come to appreciate the powerful messages that can be relayed in graphic novels.

Can’t We Talk About Something More Pleasant? by Roz Chast is a compelling graphic memoir about the struggle Chast goes through as she watches her parents age and eventually die.

Although I have seen my parents grieve the loss of three of my grandparents, I have not yet experienced that kind of loss firsthand. And it’s definitely not an experience my parents felt necessary to discuss with me or vice versa.

People don’t talk about death and dying in our culture, even though it affects every single person at some point in their lives. However, Chast’s memoir broached the subject in such an endearing and accessible way that it got me thinking: what is it about graphic memoirs that make addressing such difficult, even taboo topics more approachable than a traditional novel?

Hello, this is Marissa Lamer for the Radio Readers Book Club and I am coming to you from the public library in Hays, KS. Growing up I was rarely exposed to any type of graphic novels and comics. As I worked my way through college towards a career as a librarian, graphic novels became a genre of literature that grew increasingly intriguing, especially ones that were memoirs and nonfiction. I hesitantly started with a small graphic novel every now and then but have slowly come to truly enjoy and appreciate the value they add to reading.

Can’t We Talk About Something More Pleasant is a blend of comic strips and paragraphs of memoir. Chast finds the humor in an otherwise depressing time in the life of both her and her parents. For example, her mother’s increasingly outlandish stories help ease the pain of death reflected in more somber moments like when Chast stated “I could see that they were slowly leaving the sphere of TV commercial old age and moving into the part of old age that was scarier, harder to talk about, and not a part of this culture.”

The illustrations provide context and a visual for the parts of Chast’s story that are the most emotional and difficult to express in words.

Graphic memoirs like Chast’s make tough topics more accessible. They provide an abundance of extra layers in the writing style, illustrations, and format of the book that a traditionally written memoir cannot provide.

Scholar Eileen M. Richardson describes this advantage, “graphic novels are more than just stories with pictures; they have engaging illustrations that help readers infer the emotions and motivations of characters as well as more fully understand the twists and turns within the plot.”

Using visuals along with text can provide greater insight into the human condition and subjects that are tough to talk about or lay outside our cultural spheres.

Can’t We Talk About Something More Pleasant? is just the tip of the iceberg when it comes to graphic novels exploring thought-provoking subjects.

Here are a few to add to your reading list: Maus by Art Spiegelman is a two-volume, Pulitzer-Prize-winning graphic novel. The only graphic novel to be awarded such an honor. Animal characters are used to stereotype different races and nationalities illustrating the story of Spiegelman’s parents surviving the Holocaust and his relationship with his father.

Persepolis by Marjane Satrapi is another two-volume memoir of a girl growing up in Iran during the Islamic Revolution. It paints a vivid portrayal of life in Iran during a turbulent time through the eyes of a child.

The March trilogy by John Lewis and Andrew Aydin has won multiple awards and chronicles Lewis’ thoughts, feelings, and experiences throughout the Civil Rights Movement. The illustrator uses emotional black-and-white imagery which captures the raw emotion of people portrayed during this pivotal time in history.

Once again, this is Marissa Lamer coming to you from Hays for the Radio Readers Book Club. I hope you have enjoyed reading Can’t We Talk About Something More Pleasant? and the next time you are deciding what to read, you consider adding a graphic memoir to the list.

Complete Article HERE!

Author’s new book looks at dying at home

‘It’s my passion to demystify hospice’ — Karen J. Clayton

 

by

With more Americans living longer and aging in place, more also want to die at home.

Few, however, actually do.

Karen Clayton of Oak Harbor believes more terminally-ill individuals and their caregivers might choose home end-of-life care if they knew more about the physical and emotional support provided by hospice services.

“It’s my passion to demystify hospice so patients and families will use this truly extraordinary care,” she said. “I believe most people think hospice is a really good thing—for someone else. They do not realize they can have six months of quality end-of-life care wherever they live.”

Clayton’s just-released book, Demystifying Hospice: Inside the Stories of Patients and Caregivers, is based on years of experience working as a social worker in public and private hospitals, a hospice, and with the American Cancer Society. She plans to discuss her book and the topic of hospice care at a series of presentations and workshops around Whidbey Island this fall.

Clayton describes herself as a hospice social worker, sociologist, author and a story catcher.

Studies have shown that approximately 80% of Americans would prefer to die at home, if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home.

According to the National Hospice Foundation, many people at the end-of-life are being referred to hospice care too late or not at all.

Many Americans don’t realize hospice care is a benefit of Medicare, Medicaid, VA benefits, and many other insurance plans, Clayton said. Additionally, hospice organizations can help those with no insurance.

“Hospice offers at least six months of care for terminally ill patients and their caregivers,” she added. “So, it’s stunning that, in 2015, half of the U. S. hospice patients had this truly extraordinary care for 17.4 days or less and one-third for seven days or less.”

Home hospice services consist of a team of professionals who regularly visit patients at home and are available 24 hours a day. Nurses, social workers, chaplains and nurse aides comprise the main team and some services also provide massage therapists, even instrumentalists, such as harpists, to play soothing music.

Hospice services also supplies medication and delivers equipment, such as hospital beds, wheelchairs and personal hygiene items.

Clayton’s book doesn’t focus on medical problems but rather the emotional and practical help given by socials workers to patients, caregivers and families.

“The caregiver receives training and support from the team, and it is difficult,” Clayton said. “It helps to have someone to talk with about the types of feelings involved; fear, grief, anger, curiosity about how to help in the best way.”

She also provides caregiving tips and suggests ways to connect with people in their final days.

“It’s good when families spend time with photo albums, old family films, games, movies, playing checkers or chess, remembering the good times in their lives, the things they have contributed through their job or service,” Clayton said. “Quality of life can be maintained when patients are offered activities, food, family interactions within the limits they have.”

Clayton’s book describes the hope, healing and support that home hospice care offers.

Each story addresses some aspect of helping families through the caregiving and grieving process and it offers comfort and understanding to readers who may be going through similar experiences.

“These stories will lift your spirits and touch your heart,” Clayton said. “It’s a joyful thing to learn how to provide good physical and emotional care for the person you love.”

Karen Clayton will discuss hospice care and her book at the following free events open to the public:

Three Journeys: Writing, Caregiving, Publishing; 3 p.m., Thursday, Oct. 18, Friends of the Library, Oak Harbor Library

“Demystifying Hospice” workshop: 1:30 p.m. Monday, Oct. 22, Coupeville Library

“Demystifying Hospice” workshop: 2 p.m. Wednesday, Dec. 5, , Freeland Library

“Demystifying Hospice” workshop: 10 a.m., Saturday, Dec. 8, Langley Library

• More information  HERE!

Complete Article HERE!